It's been seven years since that spot in my chest x-ray changed my life. SEVEN YEARS...! To say that I didn't think I was going to make it this long is a gross understatement, however I do find it incredible how fast it all went.
I still recall with a painful feeling speaking with my first Oncologist about survival rates of St IV Cancer (< 3-5 mos). My first Chemo (they went thru my hand), and arguing with insurance about how they need to cover $6K PET scans. Yay 'Murica health care...
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| I'll take 2 |
Yet, as pockmarked as the path has been since 2016 I have been fortunate to of participated in 3 clinical trails, the last one enduring over 3 years: Repotrectinib. But as all good things, this one is coming to an end.
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| or REPO, as I call it cuz it sounds cool |
Earlier in 2021, I had a brain MRI that showed a couple of suspicious spots. My medical team decided to keep me on the Repo trail, but suggested adding a Neurosurgeon to the mix, hoping this specialist would be apt at detecting cancer growth vs brain edema (swelling). By 2022, everything seemed fine since these 2 spots did not increase in size. But they also did not decrease, which is an indicator that the med is no longer working. That's a huge issue with these types of clinical trails: they need evidence that the medicine is crossing the blood-brain barrier (into the head through the neck) and actively killing the cancer. Otherwise, it's considered a waste even tho there is zero proof cancer growth exists. I know, it's silly...
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| Capiche? |
The Neurosurgeon was the first to sound off this year that I needed Radiation treatment on the suspicious lesions (or get brain surgery to remove them). I was incredulous, especially since this news was coming from a Brain Doc and not an Oncologist. He was very gung-ho about it, and almost insisted by scheduling time on the butcher block. But I pushed back and decided to consult with my 2nd opinion team before risking anything that would jeopardize any stable path I was on (or thought I was on). Honestly tho, 2nd & 3rd opinions will be your salvation against physicians who are trigger-happy.
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| or have new car payments |
My 2nd opinion med-team concurred that it will be in my best interest to treat the lesions at least with radiation to help eradicate them. However, there was no real urgency since the size of them were very small and it would take one session to treat. Still, I was bummed since I went from being somewhat "stable" in Dec 2022 to needing radiation treatment in April 2023. In addition, this would bump me from the Repo trail and potentially put me on a back channel to another trail (if available) or back to chemo. Needless to say, I'm up shit's creek with a turd paddle. I had a decision to make.
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| Some guy's get all the Luck! |
Well, here we are on May 21st 2023. I did get radiation to the noggin' a little over one month ago and it's been not the best experience. Extreme fatigue and brain fog are most common, but the added steroids and anti-seizure meds to counter the side effects have been the worst. I hate to admit it, but I regret having received the radiation. I feel like I'm in a slow motion mind fudge, while time clocks away at a lightning pace. Life gets surreal, or maybe it's just cabin fever. Who knows. I'm just reaching a level of desperation where I want to be able to walk to the end of the block without feeling like I ran a marathon. To get back on that motorcycle and spin around the cage.
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| Welcome back to work |
But not all is dire. Just as I was hearing about stopping Repo I was also invited to participate in the latest promising cancer clinical trail at UCI:
TALETRECTINIB
So, it's back to square one for me. Albeit, with the experience of Super Fly T.N.T. & the Guns of Navarone.
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